Snow Globe

I'm surprised I have lasted this long, 3 years without truly going insane or becoming vastly depressed. It's quite an accomplishment really. To live with my fears and uncertainties, to work to not let them control me. Do you know how hard that is? Day and day out? The people I care about moving on in their lives and I'm stuck behind, like I've failed the 3rd grade again. Out of my control yet caused by my body. Trapped in time, or so it sometimes seems……. More like a snow glob, all pretty and content looking, yet nothing further exists beyond the glass dome other than it's own reflection or mirror of contentment. More of a farce really, than life. Day in and day out the same snow flakes fall, and the same worries go through my head. And than just as they start to settle and you can see clearly again, something comes along to shake it all up. And the flakes swirl around in a frenzy, desperately tiring to find their source of gravity against tides that could only exist inside their word, their snow globe. For in their world there is no center than that of how the outside world places them. Should the powers that be place them upside down, than the flakes will fall but never will they reach the ground, rather the glass ceiling that is their world. Thank god for the reflection, or they would truly go insane. To see the world beyond them? Past the glass where they themselves can not fall? That's too much, better to be set right again, and fall to the ground instead. Where there is order and routine and predictability. Comfortable and content within the farce, the globe. But than as all things living strive to evolve or else become obsolete, so these flakes are daring organizing themselves….

Changes...

For the most part things are going rather well. I really can not complain, which in all honesty is a nice change. But what this time of quietness has brought is self examination. With nothing urgent going on and all systems functioning, I am left to see and try to understand how I feel and how I have changed. I can’t not decide if I like these changes in my personality. I am opinionated, and quick to end the drama and bullshit. I don’t see the point in wasting energy on frivolous crap that has little value or meaning. Life is more important and should not be trivialized into the currant treads and fashions that only serve to detract us from our true nature out of some bizarre need to either conform or be damned. Life’s woes should not be a form of entertainment, yet we are attracted to exactly that, because we fear it happing to ourselves. We thrive on excitement and drama like a drug. And like an addict we will create our own unneeded drama to fill the void until something better and even more horrifying comes along to talk about. Are we that afraid of having our own sense of original thought? That afraid to revel in our own unique selves? To explore our own minds in search of something new to say? I find my self coming off as a self perpetuated moral bitch. And I don’t like it, nor do I understand it. But it is how I have changed with this illness. I didn’t find God, I found myself. And now I have to deal with me.

Lifes Not Really Worth Much...

It's cheaper to kill me than to keep me alive. That's the fine print as far as medicare is concerned. We only pay for the fourth pint of blood but not the first three? btw...(if you need 4 pints of blood you have a major problem) Oh your on dialysis? WE DON"T cover end stage renal failure, unless you were covered with us before you needed it. What's that? You had a kidney transplant before being covered by medicare and now your on immunosuppressants for the rest of your miserable life, yeah well we didn't replace your kidney so we not covering the those meds. Yeah we only cover up to 4 grand in yearly prescription costs, after that your on your own. Oh your meds cost about that in one month? Sorry...if you want you can BUY medigap coverage, but it won't cover your meds, there too specialized. oh and I forgot, we don't cover doc appointments. All this and it will cost you almost all if not more than your monthly income we give you. I KNOW YOU WERE PERFECTLY HAPPY ON YOUR MEDICAID, AND THEY COVERED EVERYTHING WITH OUT A HASSEL GIVING YOU THE ABILITY TO SURVIVE. But, your entitled to this crap and you have no choice but to take it. Great! After you kill me where exactly do I send the bill?
It's a sad day for human kind when you can only live if you can afford it. You could live an almost normal productive life, look at all the progress modern medicine has made, but your shit out of luck if you can't work cause of your disease. Life is tough enough, for people who are ill, do we really need to make it just that much harder? Oh sorry I forgot, it's cheaper to kill me, than save me. Aparently my life isn't in the budget.
WTF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jan. 12th

To all those who know what I've been going through with my illness, I have to announce that for the first time in 2 1/2 years since I was diagnosed I am able to get myself up from a seated position on the floor to a standing position! For me this is very exciting. The fear of falling and not being able to get up has been very real not to mention very limiting for me. To not be able to sit on the floor and play with my nephews, or the cat, or exercise, watch fireworks, go to the park and sit on the grass with a picknick, sit on the ground by the river or at a lake, to garden, and so forth has been a part of my life that I miss greatly. So for the first time at 12:45 today July 12,2007 I sat on the floor and tried to get up. My only assistance being my body. I am so happy it is hard to contain myself. It's amazing to me how something so simple can affect your life.

Walking Around with a Hole in My Soul

I'm thinking about my life today as I sit here on a hospital bed. So much has changed and yet in a sense everything remains the same. I'm missing desire in my life. I shouldn't have this problem having been through what I've been through. You think I would be full of life and have a renewed sense of wonder and hope, but I seem to be missing this? It's as if life has just continued and I'm wearing shoes that are just more worn out than before. Walking around with a hole in my sole and the knowledge to change, but not the desire to? I don't understand. It's like I'm stuck. Or maybe I'm scared that If I try to reclaim my life, disaster will strike me down once again. Last year I got to the point of wanting to do something with my life, I could finally conceive an idea of a future, than I relapsed and got another rare disease. A part of me thinks that if I can remain still and go unnoticed than nothing else bad can happen to me. Like a forgotten about shoe that's sits in the back of the closet and goes unseen for years, preserved in a thick layer of dust……… A mummy from a life already spent. I don't like this aspect of my self but it is the truth. It's as if I'm afraid to make a commitment to myself and to life. …..I can't read the fine print so I don't want to sign up. Sometimes I dare to dream about things I want or would like to do. It's hard because I feel like it will be ripped away from me. But at the same time what is the point of all of this if I don't move forward? By not moving forward aren't I achieving what I don't want? I guess I don't know how to blend my life together with who I have now become. I feel like I should be able to get to the point that I can live my life like I did before. Independent and unencumbered by complications unless they were by my choosing. I don't know how to take this broken body and turn it into life. I feel like I've been dumped in the middle of the desert with no directions.

Tonight...

Tonight I am fucked up. I can't deal. My doctors are tapering my prednisone and it is really messing with me emotionally. I can't deal with the emotional highs and lows. I want to take these raw emotions and throw them against the wall. I don't want them. I am sick of people not being able to understand what's going on with me, I'm sick of trying to explain it. I resent everybody for not understanding. And I am defiantly sick of saying I don't or can't blame people for not knowing how to react or understand. When the hell did my role in life become the "mediator" between myself and others. Why do I always feel that it's my responsibility to understand and cater to everyone else feelings and thoughts? I'm the one that fucking sick! The one who's life has been drastically shortened. How nice it must be to be able to go through life without any thought of how others might feel.

Hello? Does anybody know what it's like to have to think about your own mortality? The luxury of living in a bubble. One that says what are my plans for next year, what will I name my child should I choose to have one? All I want to do is cry. And I do believe me, but not too much because than I can't fucking breath! I am angry, sad, and scared, and there's not a damn thing I can do about it. I don't even know if these feelings are 100% mine or medication induced. I don't want to hear "hang in there, it will be ok", right now my response is go fuck yourself, I don't have the flu. I feel like nobodies on my side. Can somebody please just be angry along with me and not try to fix anything or cheer me up. Like I said, tonight I am fucked up.

Solace....

Why is it that I keep dreaming about people from my past? I'm not dreaming about past events but rather people from my past in currant times. By currant I mean that we discuss my illness, some ask how I am doing; some I'm telling what's happened for the first time, while others, nothing said at all. Every dream is different but the theme or overall feeling remains the same. It's a feeling of solace. As if somewhere within that dream exist what I most need, that feeling of comfort. Every dream has this feeling but in a reminiscing kind of way and not in a currant ongoing way. Almost as a reminder of how I used to feel; what made me happy as a human being. It was the simple things that gave me the biggest sense of completeness and comfort. It was sitting on the cliffs at Minnawoska State Park playing my flute and watching the hawks fly around the lake, climbing the lemon squeeze at Mohawk Mountain in 100 degree weather and finding a cave with snow in it. Sipping a cup of Java in silence and staring off into nowhere lost in thought. Stillness… but stillness within an active world. The ability to watch the world whiz around me and not be caught up in it. The art of simple observation, with its only betrayal being a knowing smile. It's true that I've lost this aspect of myself or rather it's been confined and caged up with a very limited view. No longer within the world observing, but rather trapped within the confines of my house and my mind, with my only outlet being my dreams. Perhaps this is why I'm having these dreams with people from my past. Like a favorite TV show whose single purpose in life is to allow the viewer to escape the stress of everyday life. The difference is that these dreams don't have plots or stories to tell of there own, they are just a series of simple unscripted interactions between myself and others. Solace within the mundane. For me, being or attaining true happiness and feeling complete in life comes down to these moments in life, the purist sense of enlightenment come from the simplest things.